Ezequiel Gonzalez is only 11 years old, but already he has developed an abundance of wisdom to share with the world.
He’s got cheer, too. Plenty to go around.
“He wheels up to people in the grocery store just to tell them to have a nice day,” said Gamalier Gonzalez, his father.
Ezequiel, dubbed “Q” by his family, grins proudly at such observations.
“I like to make people happy,” he said.
The Belmont, Michigan, sixth-grader has been in a wheelchair since age 4. Doctors diagnosed him at age 2 with spinal muscular atrophy type 2, a rare neuromuscular disorder that causes muscles to progressively weaken.
I want people to know that all disabled kids are the same as any other kid, despite our disabilities. And if you have something degenerative, work hard—don’t give in.
The genetic disease affects the part of the nervous system that controls voluntary muscle movement. Most of the affected nerve cells are located in the spine.
Spinal muscular atrophy is graded by four types, type 1 being the most severe.
Ezequiel’s condition began to manifest itself early on.
“We first noticed something was wrong when Q started to crawl but was never able to stand,” Gonzalez said. “And then he stopped crawling, too. He couldn’t seem to move anymore and he cried a lot.”
When the diagnosis came, it proved difficult for the family to accept. But as Ezequiel grew, he began to teach his family lessons about the incredible power of a positive attitude and an indomitable spirit.
And he has shown those in his corner of the world that he cannot be subdued.
The once-crying infant, one of three brothers, turned into a little boy with a mop of dark, curly hair and a quick, wide smile.
He became adept at zipping around in his power wheelchair, ever in search of someone with whom to strike up a conversation.
As he grew over the years, Ezequiel’s spine couldn’t keep up with the rest of him.
Scoliosis, curvature of the spine, gradually curled his body into a position that made it difficult for him to breathe.
For a time he wore a hard brace that enveloped his body.
But eventually, he had to undergo surgery.
Scary, Ezequiel admits—he’d never had surgery, other than to remove his tonsils.
In fact, his primary medical treatments had only entailed a regular schedule of lumbar injections, always under anesthesia.
“Ezequiel has received injections of a drug called Spinraza into the fluid around his spine,” said John Kemppainen, MD, a pediatric orthopedic surgeon at Spectrum Health Helen DeVos Children’s Hospital. “That slows the progression of (spinal muscular atrophy) by boosting the production of a protein involved in motor neuron, or motor nerve, development.”
Ezequiel needed to undergo spinal fusion surgery to prevent his spine from curving and to help him breathe, Dr. Kemppainen said.
The surgery took place March 5.
While most procedures of this sort involve fusing the entire spine, Dr. Kemppainen left a section of Ezequiel’s spine free to allow for continued lumbar injections.
“We fused vertebrae from T3 to the pelvis, using two rods and 21 screws to hold Ezequiel’s spine in place,” Dr. Kemppainen said. “The surgery took a whole day, from 7:30 a.m. to about 5 p.m.”
Doctors and Ezequiel’s family will remember the surgery for its medical aspects, but Ezequiel will remember things for much different reasons.
“Suddenly, Darth Vader walked into the room,” he said, his face lighting up as he recalled that day. “He gave me collector cards and we hung out for a while.”
Star Wars characters often visit the children at Helen DeVos Children’s Hospital, bringing light on the darkest of days.
Even Darth Vader can spread a little cheer.
“My bedroom at home is decorated with Star Wars characters, too,” Ezequiel said. “Otherwise, yes, it was a little painful after the surgery. Getting into my chair was a hassle. But now, I’m way better.”
Ezequiel returned home after four days in the hospital.
He has since kept up with his daily exercise regimen—arm and leg stretches in the mornings and evenings. He’ll eventually do physical therapy.
For now, his goals remain simple: Use the restroom and shower without assistance. Sit up and, generally, remain as independent as possible.
On one recent afternoon, Ezequiel grew emotional as he glanced at Anna Lane, his father’s fiancé.
Lane has been a cherished part of his life for years.
Ezequiel knows that more independence on his part means more time with her.
“Q loves to help me garden,” Lane said. “We grow vegetables and herbs, tomatoes and cucumbers. And when we’re not gardening, he helps me gather eggs.”
Five hens oversee their garden. They can name all the breeds: Barred Rocks, Americana, Rhode Island Red and Araucanas.
When they’re stuck inside the house, Ezequiel will challenge his dad to a game of chess or a game—or three—on the Xbox.
Who wins those? Dad grinned. “It goes back and forth.”
“Q is extremely skilled,” Lane said.
“We’re really proud of Q,” Gonzalez said. “He’s getting great grades and he’s working on a battery-powered car in his science class in school. It’s his favorite subject.”
When it comes to lessons learned, family members have a list.
“This kid,” Gonzalez looked at his son. “This kid has taught me so much.
“He’s my purpose,” he said. “He’s taught me about commitment, about getting through the ups and downs in life, about patience and to be grateful. I hear people complain about things sometimes … this, for us, is a long, draining fight. But Q has taught me to stay focused and fight for what matters.”
“Q has the right to be angry, but he’s not,” she said. “He’s taught me about the difference it can make to be positive. He makes me want to be a better person. He’s my heart.”
For his part, Ezequiel is quick to impart a few wise messages.
“I want people to know that all disabled kids are the same as any other kid, despite our disabilities,” he said. “And if you have something degenerative, work hard—don’t give in.”
Treating disabled people with dignity and equality—the same as you’d treat other kids, he said—means thinking about the challenges faced by those in wheelchairs.
“A lot of times when I am out with my family, we find the handicapped entrance is in the back of buildings,” he said. “Maybe in some back alley or by a dumpster. It would be great to have a door up front for us, too.”
Meanwhile, Ezequiel readied for his own grand entrance.
Lane and Gonzalez married June 8.
“And Q is our best man,” they said.